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Category: Parenting a Person with Diabetes

Being a parent of someone with diabetes can be a challenge. When they are small, you can have total control of care but it can be hard to take a break and allow others to look after them. As children grow, new challenges present themselves. There is going to school and handling puberty as well as the teenaged years.

I found this photo the other night. It was tucked away in an album I had created for my son when he was just a baby. There were sweet memories and even a bit about the time he spent in the hospital after his diagnosis with type 1 diabetes. When I saw this photo however I wanted to cry.

It has been nineteen years since this photo was taken. My son is now a strong young man living on his own. The years have brought both of my children many challenges in their short lives and the way they have handled them makes me proud. Looking at this photo, however, cuts me to the core. How did I not see?

When I posted this photo to social media someone commented that the boys looked happy. Another person commented on how cute they were. I was struck by how thin my youngest was. His little face was hollow looking. His eyes seemed to be sunken in his small head. How did I miss that?

My youngest was always the slimmer of the two boys. He was born a pound lighter than his older brother. Throughout his life, he has always managed to remain slim. Looking at this photo though, he was beyond slim. As some would say, he looks poorly. He has a sickly pallor behind the glimmer in his eye. Why didn’t I see that then?

I now know that his body was eating itself to survive. He was just making enough insulin to keep himself out of the hospital. I know that holiday treats and Christmas dinner must have been hard on his small body. His blood sugars would have been skyrocketing out of control. No one was stopping them. No one was helping his tiny little body to work properly. What sort of parent was I?

I made sure that my children ate very few preservatives. I attempted to keep my them safe from toxins. While I thought I took good care of them, this picture suggests otherwise. Somehow I missed this. I didn’t see him fading before my eyes.

19 years ago this picture was taken. I thought that I was long past the feelings of guilt and sadness. It would appear I was wrong. An image of two sweet, small faces smiling from under a Christmas tree brought it all rushing back. This picture of innocence has unleashed a flood of reprimands for my former self.

This is why parents of children with diabetes don’t need society to blame us for our child’s diagnosis. Years later, we can still berate ourselves for what we didn’t do. We can still cry over the fact that we failed to protect our children from their own bodies…even when it really isn’t our fault. We still feel carry that guilt.

It is that time of year again, time to get ready for the Great Pumpkin and all of the fun…and anxiety that Halloween can bring many parents. For those families dealing with diabetes for the first time, the stress of trick or treating with diabetes can be greater than dealing with the challenges of Christmas.

Children are invited to Halloween parties. There are Halloween events at school and there is the inevitable night of trick or treating. What do you do with all of that sugar?? Well here are a few things that have helped some parents get through.

Eat while they walk

Its okay to let your child eat candy while he/she is out trick or treating. In fact, go ahead and encourage it (as long as usual Halloween safety rules are applied of course–Mom/Dad checks candy or it is from the home of a good family friend). All of the walking, running and general excitement will most likely lead to some serious low blood sugars. You can help to avoid this by letting your child eat the bars, rockets (Smarties for my US friends) and other treats. Your child will feel “normal” and it will be a fun way to keep blood glucose levels in range.

Halloween treats are great from treating lows when you have diabetes

Halloween is the perfect time to stock up on low supplies. It offers fabulous 15-gram packs of sugar just perfect to carry in your bag and treat lows. In fact, even if your child doesn’t take part in Halloween events, you may want to head to the grocery store during this time to grab a few bags of low treats and save a few dollars! They tend to be a lot cheaper than buying glucose tablets from the grocery store.

Make Halloween treats part of a meal

If you like to stick to a set meal plan, you can still add in some of your child’s Halloween treats. A bag of chips is equivalent to a bread exchange. A snack-sized chocolate bar is the equivalent of a fruit exchange. For a treat, allow your child to have one of their Halloween items as part of a meal or snack.

Buy the candy back

Some families offer their children cash for their candy. The children can then take the money that they earned collecting candy to purchase a book, game or favourite toy. Mom and Dad can take the candy to work or save it to enjoy during some downtime when the kids are in bed!

The Great Pumpkin

Have the Great Pumpkin or Halloween witch come to visit. Much like buying the candy, parents will exchange the candy while the child sleeps. In place of their loot, the child will receive a movie pass, book or other treats that don’t involve food.

Donate it

Yet another way for our children to learn care and compassion is to take their candy to a local hospital or hostel. Have them share their candy with children who are unable to go out for Halloween.

Halloween is often a fun time for children. Remember that children with diabetes are children first. Use some of the tips above to ensure that your child has a fun and memorable Halloween or let us know what works for you in the comments!

In June of 2011, I was stressing out. My son was finishing up the school year and preparing to head away for a few weeks with his father. His care was notoriously lacking when he went away. I was stressed to the max.His insulin needs were less and less. Despite my best efforts at reducing carb to insulin ratios and turning down basal rates, he was still going low. I wasn’t sure how I would handle it.

But guess what? We survived. He did and I did. He was 13. The burden of care fell 80% to himself. His father and brother helped out with site changes. His father did some of the night-testing. I worried and learned to live without diabetes for a few weeks but we survived!

Here are a few things that helped deal with shared parenting a child with diabetes.

Two types of calls

We had two types of conversations. “How are you? Are you having fun?”, was the first call. This was the start of all conversations. Diabetes could not take a front seat unless there was an emergency. He had to be a child first.

At a set time, however, was the second type of call. This was a diabetes conversation. This involved having a meter out, sharing readings, what he was doing and why a high or low could have occurred. These were strategy sessions…and much shorter than a regular call. My son didn’t want to be bothered by mom’s nagging or diabetes but he also knew that it had to be done. My concession was to make it short. I gathered data quickly and offer suggestions.

Seven years later, parents can now get real-time data through sharing apps on the Dexcom and there are even a few hacked Libre sharing programs that can be used. This can definitely help to ease a parent’s mind but remember not to become obsessed by the numbers. This leads us to another thing that can be hard to remember.

Different doesn’t mean bad

I think that this can be the greatest challenge when joint parenting a child with diabetes. Whether you are divorced, separated or living in the same household, often there can be different opinions on diabetes care. A reading that you feel is high and needs immediate attention may a number that someone else is okay with because they know that there is a very active afternoon planned.

Try not to freak out every time the other person does it differently. Different means just that…not the same way you would handle it. The biggest rule is “does different endanger the life of your child?” If not then bite your tongue, let your child enjoy their time with the other parent and say a quiet prayer of gratitude when your child comes home healthy and happy.

Adjust basals accordingly

When my son would spend time with his father, he would spend most of his time on the go. He would be catching up with old friends. He would be on quad or spending the day at the beach. There would be late nights and later mornings.

Before he would go away, I would make small tweaks to his basal rate to allow for an increase in daily activity and a decrease in morning activity. I allowed him to run a little higher than I would if he was with me because I also knew that he wouldn’t test or correct as often as he would if Mom was there to ask “did you check lately?”

Take some time for you

As much as you will stress and worry, this is your time off. Diabetes has left the building. Allow yourself to rest and regroup. Spend some time with yourself. Enjoy restful nights. Read a book. Go out with friends. Do anything that makes you truly happy because no matter how you feel about the child’s other parent…that parent loves your child as well. They will do their best to take care of your child and leave he/she with great summer memories so make some awesome memories of your own.

When you are reunited with your child, you will both be ready and recharged for all that diabetes throws at you!

18 years have passed and still, I remember it like it was yesterday. March 17, 2000.

The day started out sunny but by the end of it a horrible storm would hit my world and nothing would ever be the same.

We drove through a raging snowfall to take my lifeless 2-year-old son to the hospital. There we were told that he had Type 1 diabetes. They would monitor him for the next 24 hours to see if he would live or not.

Thankfully he survived that day but the fear never left me. Before we left the hospital I was terrified of taking him home. I worried that I would make an error in his insulin and cost him his life.

When we got home, I did make mistakes. Because he was so young, he didn’t know how to tell me if he was high or low. We didn’t have continuous glucose monitors then either. If he fell asleep, I would panic. The meter would be taken out before anything else. I would clean his tiny finger, get a drop of blood almost as big as the pad of that finger, and apply it to a test strip. 30 seconds later I would finally learn if he was low or simply a toddler in desperate need of a nap.

Over the years he would learn to tell me if he was high or low. His attitude would sometimes tell the tale for him. When he short tempered…and trying to kill his brother by throwing things at his head, he was definitely high!

Eventually, he learned how to tell if he was low. He would come to me and say he felt “weazy” and needed some juice.

We moved from injections to an insulin pump by the time he was 5. My family couldn’t handle seeing him sitting by himself eating meals at set times when there was a better way. They helped us to pay for that first Cozmo insulin pump.

Our life was changed when his pump arrived. No longer did we have to deal with 6-8 injections per day. I was able to allow him to graze. This was an incredible freedom for a small child…and mom.

Puberty came with its own challenges. The teen years were much like those of children without diabetes. There were good times and bad. Somehow we made it out alive and that is more than can be said for some children with diabetes.

My son is now 20 years old. He has lived with diabetes for 90% of his life. That makes me want to cry. 90% of his life has been dealing with injections, infusion set pokes. finger lancing, carb counting, high blood sugars and lows. He has learned how to workout while managing diabetes He goes out with his friends at night and as a few drinks all while dealing with insulin, test strips and diet.

My son works in the construction industry and must keep his pump warm when temperatures dip below 30C. He manages to test and combat lows all while wielding a hammer and trying to get his work done.

He lives thousands of miles away. His roommate has known him his entire life. They watch out for each other. He knows about my son’s “broken pancreas”. I wish that neither of them ever had to learn what diabetes was or how to handle it but life had other plans.

18 years. It amazes me and saddens me. I am so blessed to have a strong, young man who is still doing so well after all of these years. It fills me with gratitude to think of all of the love and support that has guided me on this journey. I still wish that he didn’t have to be on it. I can’t believe that 18 years have passed already.

18 is just a small blip in his life. I look forward to watching the next 18 years and another 18 after that. Who knows what technology will have in store for him then. Perhaps he will live to say “I used to have type 1 diabetes but now I don’t”. I certainly hope so.

As a parent, there are certain things that I want my son’s significant other to know about diabetes. My son’s list of important qualities and things that she needs to know is probably quite different. That list is for another time. This is my list of ideals wants in a partner for a person with diabetes.

I want her to know when my son’s blood glucose levels are out of whack.

In school, he often had teachers who just “knew” when he was out of range. I felt safe because they would make sure that he tested and took care of himself. She needs to make me feel the same way.

I want her to know to carry glucose with them at all times.

A low blood glucose level can seemingly come out of nowhere. My son keeps some treats on him but we all know how easy it can be to run out at the most inopportune moments. His ideal partner, for me, would be a gal who recognizes this and carries a bag filled with candies easily accessible in her purse.

My son would be happy if she carried all of his supplies in her purse too but as I said, that’s a different wish list.

I would love to see his lifelong partner remind him to test at night or at least wake him when he seems restless and out-of-range.

My son doesn’t currently have a CGM. He once relied on his mother’s inability to sleep to keep him safe overnight. Now that he lives on his own, he wakes himself at night to test. I know that he would love to have a break now and again. A person who would help him at night would be a blessing for both of us.

I want to see his partner know how to help him on days that diabetes is too much.

As much as helping my son at night would be wonderful, we all know that there are days that we just don’t want to diabetes. When he lived at home, my son would some days just simply hand everything over to me for a day and I would deal with it. I would count carbs, bolus and test.

I don’t know if he would still want that sort of full-on break but I know he still prefers someone else to put in new infusion sets. It would be nice to know that she cared enough to learn about his care and help him where he needed it.

I want her to know that diabetes is part of his life but it isn’t what defines him.

Finally, as much as diabetes can be overwhelming and time-consuming, it doesn’t define my son. I would love to see his life-partner understand this. I want her to love him for the incredible, handsome, quirky guy he is.

Diabetes is a lot of hard work. I want her to understand this but not be deterred by it. It will mess with their schedule. It may impact his mood but he is strong and deserves only the most loving and supportive partner. In return, she will get a pretty amazing guy.

Do you have an elf in your house? Is there a little creature living with you who gets up to nightly shenanigans and watches your every move? I am here to tell you that if you can live with an elf on the shelf for a month, you can manage diabetes over the holidays!

Seriously. That little guy brings a lot of pressure to a family…and so does diabetes but you’ve got this. Here are a few tips that are going to help you find your way.

WAG it

Wild a$$ guess when need be! If you don’t have your scale or your measuring cup around. If you aren’t 100% sure on what exactly is in that food item, wing it! Chances are that you know more about carb counting than you think and you will probably do fine.

You can also ask Google or download a calories counting app like the Calorie King or My Fitness Pal. These are great tools when you are completely out of your element.

Pre-bolus

If you have a child with diabetes who would love to graze their way through the holidays, give it a try! To help with your own sanity however, I would suggest that you pre-bolus before you set them loose. Ask them what they plan to eat, set it all on a small plate and then bolus for as much as you are certain they will eat. (This can be done on injections or a pump) Give them the insulin that will cover at least half of the food (or all if you know that they are good eaters). Remember that they will most likely be excited and active so its okay to inject a bit less rather than more.

Check…a lot or use a CGM

To help survive the holidays with diabetes, make sure that you are checking your blood glucose levels every two hours when you are at events or gatherings with a lot of food and/or excitement. If you have a CGM, make sure it is calibrated properly and close by.

Put one person in charge

To avoid parents double bolusing or giving extra insulin, make one person in charge of an event. The other parent can relax and simply enjoy the event.

Schedules will be thrown out the window. Adapt

Chances are very high that all of your careful scheduling will go out the window over the holidays. Concerts will run late. Dinners won’t be on time. Chaos will reign supreme. That’s okay. This is only for a very short time. Learn how your insulin works and do you best.

Do your best

That last line was worth repeating. Your best is all that you can do. If you child survives and has fun, you are a complete success!! It is that simple.

The holidays are a time to create wonderful, loving memories. Don’t spend them wrapped up in readings and insulin. Test every couple of hours, watch for adrenaline crashes and find time to breathe.

Have you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues. After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.” Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue. As parents of people with diabetes, we have things that we wish our children knew. There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed, we have privately cried a hundred more… We didn’t want you to see how much it hurts us to hurt you. We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously. Still.

We know that you can handle it. We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…We know that you are more than a number. As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay. We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life. It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing. Ask. We might be out of practice but we are quick studies. We will help you any way and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you. Honestly, I wish I could help you carry that burden for a week and let you breathe. I have told you this before and I mean it. I don’t care how old you are. You are someone’s child with diabetes. You carry the same burden as my own child. It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out. I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too. Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

Type 1 is not the same as type 2 diabetes. Each disease has its own challenges and issues.

We did not cause our children to develop diabetes. Seriously, we carry enough guilt about not protecting our children from an invisible disease. Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do. No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure. It just keeps my son alive…and can kill him. It is a carefully managed tool that he use must use at all times.

An insulin pump is not a cure either. A pump is an expensive tool that not everyone can afford. Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive.Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets. The cost of diabetes supplies can range from the equivalent of a car payment or mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night. After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time. I worry because diabetes is deadly.Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes. This isn’t just talk. This is real. I have lost friends to this disease. Parents of children with diabetes have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.

It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house. Strangely, it hasn’t consumed all of my thoughts this month. I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!

That is unheard of for me.

Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.

This March has been a bit different. I was busy this March with other things. For the first few days of the month, I got to spend time with my nephews after not seeing them for a few years. I was able to meet my youngest nephew for the very first time. We enjoyed cuddles and goofing around. It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.

When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day. At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day. My sweet little nephew had bruises on his knees from playing outside with his trucks. When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.

I am so glad that none of my nephews have had to go through this. I remain in awe of how well my son has managed to cope. He won’t even notice this day. Life with diabetes is all that he has ever known. For him, it is simply St. Patrick’s Day–an excuse to go out with his friends and have a beer.

Today I will pause as I always do. Most likely I will message a dear friend whose son shares this “dia-versary”. On this day, I will be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life. I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.

Today I am sure that I will slip back in time for a moment. There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago. I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital. At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.

Today I will quietly cry for the life that was lost but I then I will wipe away the tears. As I tell others, today is about celebrating. Today marks 17 years that my son has lived strongly with type 1 diabetes. He has never let it stop him from doing anything–except for shoveling the driveway in the winter. He seemed to often be conveniently low as a child during that particular chore.

My son now manages his diabetes his way. I don’t test him. Rarely do I know what his blood sugar levels look like. I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.

It hasn’t all been perfect. There have been stumbles along the way. I still remain there to help when asked. We discuss carb counts or extended boluses. I still do site changes when required. Seventeen years later, we are both finding our way but he is healthy and thriving. I can ask for nothing more…except a cure of course.

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer. Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved. Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years. It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time. It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt. I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings. Originally I wanted to know every reading. I would stay up to all hours just so that we could talk and he could tell me what his readings had been like. That didn’t work. He did his best to be busy when I wanted to call and talk. I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily. I don’t know his readings from day to day. He calls me when he has a problem. We troubleshoot issues together. I still work on being okay with the fact that I don’t know his A1c. I still struggle with not being able to hook him up to the technology that I want him to use. Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines. I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well. I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence. Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!

Day two of Dblog Week asks what we keep private. What is it that is off limits for sharing with our readers or maybe even family and friends? What will you never read about on these pages?

This is actually an interesting topic. Once upon a time, there was almost nothing that you would not read on my blog pages. I was an open book in part because I never thought anyone else would read what I had to say. It was my personal journal, sharing my most raw emotions. As friends and strangers began to read, things began to change.

I no longer write when emotionally charged. I still write posts with emotional attachments but I try to wait, write, re-write, wait, and then post after the fact. I want people to understand some of what I deal with as a parent of a child with diabetes but I don’t want them to lose the point in a sea of anger or frustration.

I no longer write my son’s name and very rarely the names of anyone around me out of respect for their privacy. My son spent a lot of his early life with diabetes in the spotlight. I wanted people to know more about the disease but I never considered that he’d preferred anonymity. He did. At 16, he laid down the law. He wanted his privacy. He did not want to featured in diabetes related campaigns or any other displays. I have learned to honour that.

Over time my life has changed and so too have my blog posts. I now seek out topics that advocate and highlight issues of awareness. Our life with diabetes has changed. It no longer consumes me 24/7. It is simply a nagging thought in my head but a burden for my son to now carry almost solely on his own. I can no longer moan about sleepless nights but I will still share my feelings of guilt at being able to sleep.

I will still share many emotions and experiences in my blog posts. I try to keep them real and from the heart. Yes, there are a few things that you will never read about. There are a few things that family and friends will never understand either but the important things that educate, advocate and raise awareness will always be shared.